I've had so much trouble and stay in so much pain, along with constant Cipro 1000mg a day, that I am thinking of going back to the Ileostomy. But I have heard of horror stories of SHORT BOWEL symdrome, when going back. What have some of you heard or experienced. I just can't take all the meds and pain anymore.
Please help.
God Bless!

Xander,
I feel so bad for you and your suffering....I had considered the BCIR when my k pouch was acting up but ended up geting it fixed (again and again!)...all I can say is do not give up hope. I know how it feels to be in the vicious cycle of pain and meds and hopelessness and no I would not trade a k pouch for an outside ileo if I could help it....again, if I could help it...I am a firm believer in fighting for what you believe in and if you wish to keep the BCIR or move to a k pouch...then fight for it and keep fighting until it is right...but you need to be part of a positive team of doctors and health care specialists who are fighting along side you and not at cross purposes to you...get some good doctors on your side and then make a plan that takes into account your pain, your pocket and your lifestyle...how much insurance do you have, how long can you fight and how much time and money can you afford????these may seem like petty consideration when you are suffering but you can not neglect them....it has taken me over 8 years to get it right and for now I am still holding my breath but......
I always knew that this is what I wanted and how I wanted to live and my doctor has respected that from day one.....I can survive the pain if I know that it is temporary and that the result is the one that I hope for....how about you? What do you want? How do you see your life in the next 3, 6 or 9 months and do you have a strong support group of friends and or family?????
Short bowl can be very uncomfortable for some people and hard to manage...their are a lot of considerations that are similar to some of the j pouch problems....absorption, but burn, diareah and lots more....if you are not lucky...but some people have absolutely no problems (they are usually not on our sites...you usually hear of those of us who are like you, suffering).
So, take heart, you are not alone....
Whatever you decide, there are a lot of us here who wish you the very best of luck and health and who will be here for you.
Sharon

Cipro can make you feel so sick, I am so sorry. Are you getting Zofran for the nausea? It has been a godsend for me when I get the gastro flu or side effects from meds.

I now see a terrific gastro dr. after 29 yrs with my Kpouch and not ever seeing one as I have been problem free - (I now have an erosion). I used to just call my surgeon if I needed anything and he'd take care of by phone but has long retired.

I discussed the probs others are having with pouchitis with my new gastro and he said Cipro or Flagyl. I explained in those early years, I'd get it once in a great while and my surgeon (who trained with Dr. Kock) always prescribed Doxycycline and I just usually had to take for a day up to 3. He hadn't heard of this. I sometimes take this for my sinusitis and it always makes my poop so thick probably cuz it helps with broad bacteria. He said he'd give me a script to have on hand as my internist has done so in the past to have when I'm going to travel to mexico or somewhere I worry about getting a major bug!

Maybe you can try this or another type of medication. Bentyl helps with the cramps, do you take this?

Ask God for extra strenght, you are not alone as Sharon wonderfully expressed.

You ladies are wonderful and pure saints. Thanks for the advice and comments. I've had it for 18 yrs, but I hate to say more than most, the years have been bad. Multiple long stays to try and clean out the pouch. I have "undertermined" Crohns, so I wonder if that is what the main culprit is, but on the other hand, I really think the immune system is attacking it and going wacko, so to speak.
The body pain can be VERY tough to live with and some days just to get something accomplished, I end up taking Meth, Demerol and Valium. Used to sleep all the time, but now the pain has me having issues with insomnia. Then there is my DEORESSSION. One heck of a mental case, huh?

Xander,
I am going to go off topic with you for a second and ask about your diet...you say that you had problems emptying your pouch and pains etc...have you tried dissociating what you eat...I have found over the years that I get much better results all around when I don't mix carbs and protiens....I also drink prune juice and a glass of regular juice + coffee in the morning and my pouch gets ...whosh...washed out within 2 hours...no residue problems unless the pouch itself has 'fallen or twisted'.
You might wish to read fit for life..a great book and a fabulous read with tons of helpful infor for everyone who has ever had intestinal problems...I only take pain meds at night now...I can handle the days fine but if I eat white carbs I end up really stuffed up in the pouch and have all sorts of problems later...
It couldn't hurt to try it!
sharon